There may not be a right way for a doctor to tell you that their hospital has done all they can and that they are no longer searching for a cure for your son, but there is definitely a wrong way.
I understand that doctors do see some of their patients die. That doctors don't want to give false hope or watch parents put their child through some drastic (and painful) treatment when there isn't much hope of a cure. Doctors do need to be realistic.
Yet, when a parent asks the surgeon whether a port will be placed during surgery and the doctor jumps in with "We will need to talk about this. We aren't looking for a cure. We can give him ICE again or chemo for comfort. No cure."
When we sit down with him after the surgery and he once again utters the same words, only quickly adding that he called the national Wilm's doctor for suggestions but hasn't heard back, but hey, do you have any questions?
Only when I pull out the papers for this study and suggest that he refer us to Mayo does he acknowledge that there is different options. Quickly he points out that this is just a Phase II trial, that nothing has been proven with this treatment before. Yet, goes on to say, "if it were my son I'd do the same."
We ask to be referred. The doctor mentions papers I will have to sign for the records to be transferred. Then we don't see him, nor the surgeon, again. We've been brushed off...handed aside. I have to ask for the papers minutes before leaving the hospital in order to get the ball rolling, myself.
The wrong way to tell a parent about a child's serious illness is not mention that there are possible other choices. The wrong way is to act like the little boy sitting next to his parents is all but dead as he plays his video games and squirms under the watchful eye of everyone in the room. The wrong way is to silently say to everyone in the room "There is no hope."
We left the hospital on January 8th with no hope. We cried for our little boy in the back seat, picturing our family without him. Picturing the days ahead.
As I watched my sweet son run into the house and play with his brother and sister, as I saw him win a new video game, as I sat on the floor playing a board game with him I shook myself out of the hopelessness...I'm not watching a dying boy - I'm watching a boy live.
When my mom found the study for us and got us in touch with doctors I had hope again. This study is not a sure thing. It is in it's trial stages, and it's only a hope that it will work on this type of cancer. Yet, it leaves room for a possible breakthrough, for a possible miracle. It leaves hope.
I'm upset that the whole two years that Jacob went through treatments that I didn't like his oncologist much but stayed with him. I'm upset that his lack of bedside manners disturbed me time and time again but I brushed it off. I'm upset because as a doctor he should have mentioned every single option available to us instead of just writing us off, letting us walk out the door with no options. There may not be a right way to say certain things to a parent, but there definitely is a wrong way.
I'm unsure of what the future may hold for us, but trust it to God. I'm reminded of January 8th again and again and chastise myself for the way I let a doctor break me of any and all hope.
Psalm 118:8 (KJV) "It is better to trust in the Lord than to put confidence in man."
My trust is in the ultimate healer, the One who holds the future. Whether Jacob is healed here on earth or in heaven God always offers us hope. And I'm still hoping for a miracle.